Hanging In There

It often feels as if I find myself living in a world where it's very easy to quit. Many things in life that used to be considered constants, like marriage, family, and faith, seem very disposable these days.  Some things just shouldn't be given up on, no matter how hard it gets.

Life with our youngest son has never been easy.  It's easy to love him.  That smile.  That sparkle in his eyes.  That deep belly laugh that bubbles up.  Loving him is the easy part.  Raising him is not.  Preparing him for what's before him is not. Middle school is coming.  Far too soon.

Our son's behavior has stabilized to a managable level.  We have very few meltdowns these days.  He seems to have learned how to regulate his anger and frustration.  The manic repetitive behaviors that he can be prone to have diminished as well.  These are all very positive advancements.

My husband and I have known for awhile that our son was in the midst of another regression phase in his abnormal developmental cycle.  As I have discussed previously, he tends to experience a burst of development that eventually plateaus.  That plateau is most often followed by a regression period.  This phase is almost always accompanied by severe stuttering and blocking, increased drooling, inattentiveness, distractedness, clumsiness, and loss of self-help skills.  This period of regression is often followed by another burst of development.  Ironically, these regression phases often accompany a large growth spurt, almost as if his body can't physically grow and maintain intellectual development at the same time.

At our son's fourth grade parent teacher conference last week, his team was very frustrated.  They had implemented both traditional and creative methods to try to help our son stay on track, self-regulate, self-monitor, and learn.  Unfortunately, few of their efforts seem to be helping.  Their frustration directly mirrored the frustration my husband and I have been feeling at home.  At school, he is eating his pencils.  Actually eating his pencils.  Chewing the tips off.  Eating the erasers and metal ends.  He is wearing wrist bands and chew necklaces.  They tried chewing manipulatives.  I bought him chewable pencil toppers from the Autism Support website.  They tried gum, candy, sour hard candy.  Nothing seems to stop the chewing.

They cannot get him to focus or remain focused.  It requires physical touch to get him to go to his seat and keep him seated.  It's not oppositional behavior or aggressive behavior.  He simply gets up and wanders around.  He takes forever to get his belongings and settle in to work.  When seated, he stares into space or stares at his peers.  He forgets everything, including clothing, agendas, books, lunch bags, anything not attached to his body.  Things that we read and reviewed at home, things that we know that he knows and understands, he gets wrong on the tests.  There is no consistency to the type of questions that he gets wrong.  Nothing that can be pin pointed to focus on with our studying.  He is consistently inconsistent.

Against all odds, he scored a 91% in math on his report card. He was so excited.  He calls himself a math genius.  He scored a Satisfactory in science.  Predictably, he scored a 65% in reading on his report card.  Passing is 65%.  We wondered if bonus points were utilized.  Reading is a significant challenge for us each night.  Getting through the reading with a child that stutters and blocks is PAINFUL.  We have utilized many coping techniques including techniques from his speech sessions; a clear acrylic reading tracker; sharing/dividing up the passages; note cards/study cards; question and answer discussion, etc.  In spite of our best efforts, and their best efforts at school, he is passing by a single point.  It is especially frustrating because it isn't a true reflection of how very bright he is and what he is capable of.

His Title I teacher, his primary support and our primary contact with questions, concerns, and recommendations, is going on maternity leave in two weeks.  She will not return until March.  His classroom teacher is going on surgical leave in two weeks and will not return until January.  He isn't due to be tested by the school psychologist until March.  His Individualized Education Plan is not due for review until April.  His neurological team wants a full scale evaluation by the school team but that won't occur until the spring.  The kid that needs the most consistency will have none.  We are left with lots of questions but very few answers.

So what do we do?  Where do we go from here?

As a family, we keep life as consistent as possible.  We keep him in occupational therapy and speech therapy at the hospital.  We act as a resource for the school team, both old and new.  We continue to read and research, question, and challenge.  Our goal at this point is to keep him from regressing further.  We hope for growth but will not become disheartened if none occurs.  This year may be a wash with little progress gained.  Our frustration is that only puts him that much further behind his same age peers.  Unfortunately, we can't change his circumstances or his developmental cycle.  He is who he is.  The school circumstances are what they are.  We will continue to fight for him, fight with him, and support him every single step of the way.  We will give him our best.

Tears will be shed.  Fears will be faced.  I pray that progress will be made.  He is too important to give up on.  He is worth the effort.